Don't lose hope. When it gets darkest the stars come out. 









Photo by Rick Guidotti

 

 

I was 24 when I unexpectedly got pregnant. I thought Hey! First baby, I didn't smoke, drink or do drugs - Nothing could go wrong! Or Could it?   I had my very first ultrasound at 21 1/2 weeks. I was  going to find out the sex of my baby. I was so excited and anxious to know that I couldn’t hardly wait till they called my name. “It’s a girl!” Tears welled up in my eyes as I looked at my baby girl on the screen. Her heart beating, her hands and feet just moving everywhere. She was an active little baby. I was in complete awe and enjoying every minute that I saw of my little angel on the screen. Because I saw what I believed to be a normal, healthy baby, my oblivious happiness continued throughout the entire ultrasound. The technician gave me no indication that there was something terribly wrong with my child. I was given my ultrasound pictures and I was sent to the waiting area for my regular ob check up. While I waited the nurse called me back to the doctors office. During my regular visits I never had to talk with the doctor in his office, I just knew something was wrong. As I waited impatiently, my nerves shot, palms sweaty - I just had a bad feeling about this. Calm down! Everything is going to be all right. The Dr. came in, introduced himself, and said that he found some things in the ultrasound that was disturbing to him. He found a growth on her neck and her positioning of her hands and feet were abnormal. He wanted me to get a second opinion from the Drs. down at Maternal Fetal Medicine. He scheduled me an appointment with them later that day for another ultrasound. He then brought me back to the waiting area so I can get my regular 4 week check up. That’s when I broke down. I hated to do it in front of other expectant mothers but I couldn’t hold back. After my check up I had a few hours to kill so I ate lunch and called a few people for support. “It’s a girl, but there’s something wrong”  Talking about it just made me feel worse. I was so happy that I finally knew what she was but at the same time I was dying inside. I kept asking myself , why was this happening? what did I do wrong? I just hoped that the next ultrasound would prove the first one wrong and she’s was in bad position that gave the doctor a bad reading. Realistically I knew that wasn’t the case but I just wanted her to be OK. The not knowing and unanswered questions was killing me. Talk about growing up REAL fast. 

I went that afternoon to MFM for another ultrasound where they confirmed the DR’s findings. He said she had a thickened nucal fold, an enlarged heart, her hands and feet were turned inward and low body weight for gestational age. My heart was going a 100 miles a minute as I  tried to understand the words that he was saying. He explained to me that it possibly was Down’s syndrome or another type of genetic disorder due to the particular pattern of anomalies that were observed. He suggested I have a amniocentesis done to see what exactly my daughter’s condition was. For ease of mind, I decided to go ahead with the procedure. This was a very hard decision because there was a high chance of a miscarriage but I really needed to find out what exactly is going on. Thankfully, although painful, the procedure was done quickly and with no complications. I then talked with a genetic counselor to explain what I had in store and what to expect over the next few weeks. It would take two weeks to get the results back. The longest days of my life.  It was a quiet ride home. I were devastated and at a loss for words. I was overwhelmed with sadness and anger not to mention the weight of all the information that was given to me. So many thoughts went through my mind. How  would care I for a physically disabled child, what types of surgeries would she have to endure, how would I afford the surgeries and how much will she struggle through life with such disabilities. Of course I would love our baby no matter what, which I already did, but I knew how cruel others could be and how society could sometimes have hang-ups with embracing the disabled. Life is hard enough without having these types of problems to begin with. I was both sad and scared for my baby.

Two weeks passed rather slowly, when the phone rang. It was the genetic counselor with the results from the amnio. It came back normal. It wasn’t a chromosome disorder. It was something else, but what? They would know nothing further until she was born. I continued to see the specialists at MFM. The visit after my results came back was probably just as overwhelming as the first. The doctor stated by law, because they are unsure of the severity our baby’s condition, that I could opt to terminate the pregnancy. He was stopped immediately and was told that wasn’t an option. I needed to give this baby a chance. No matter what she had, what her disability was I was going to give her a chance to live and she was going to be  loved and cared for the same way I would any other child.

My case was presented at a genetics board meeting where a possible diagnosis was given. Amyoplasia. A muscle disorder that affects the hands and feet. They could not confirm this until she was born so I continued to see two sets of doctors, twice a week- since now my pregnancy was considered high risk. The next few months, things just got worse. My first 5 1/2 months of pregnancy I was sick - vomiting 3-4 times a day. My baby was not doing her “breathing exercises” and her Bio-Physical Profile scores were low. She needed to score an 8 out of 8 and she at times would score a 3 or 4. She was slowly gaining weight but she was still at a low weight for how far along I was. The specialist told me if she continued her low scores that they will need to take her because there was a high chance she may die in my womb. If she did make it through pregnancy, there was also a chance that she would not survive after birth. I just couldn’t believe all that they were telling me. How can they say that my baby was going to die? She looked so perfect on the screen. How can they let this happen? Life was completely changed forever. Everything that I thought was important before no longer mattered. I had bigger challenges to face. I needed to get through this. I need to be strong for my baby.

Abigail Marie.  The perfect name for my perfect sweet first born child. Regardless of the traumatizing facts of my situation, the feeling of giving my child a name made everything seem normal again. Knowing that I gave life to Abigail Marie was probably the only thing that kept me strong during my time of pain. The challenge of preparing for my daughter’s birth and possible death at the same time was very hard. I felt so helpless because there wasn’t a thing that I could do to protect her. Instead of preparing her nursery, I was preparing for her funeral. Not knowing if she would survive after birth made me fully appreciate every day I had with her in my womb. And by this time, she had become more and more active. Just as other parents, I was overjoyed when I would feel her movements, kicks and hiccups.

I found it hard to be out in public and deal with all the comments and questions from people who noticed that I was expecting. Sometimes, depending on how strong I felt at the time, I would share my situation with them. Some suggested that I should just end Abigail’s life, which was very upsetting, but most people were extremely supportive and valued my daughter’s precious life as much as I did. The term "you are so strong" was heard often, although it didn’t feel like it most of the time. Focusing on my career obligations was also an incredible challenge. But I had to persevere, at least for Abigail’s sake. Just as every helpless child does, she relied on mommy to be strong for her and care for her unconditionally.

Although I had an incredible network of people praying for Abigail’s health in hopes of a miracle, that my little fighter would pull through this, I still prepared for the worst. My  family and friends were so supportive and thoughtful throughout our entire pregnancy. I received so many special gifts for Abigail and cards reminding us of how much Abby & I  were loved. The phone rang off the hook with people who were just checking to see how I was doing and if I needed anything. Their continued love and support gave me the courage to get through each day. While I continued to enjoy and find laughter in her frequent antics in the womb, I became more aware of our due date that was quickly approaching. I made it a point to read to her, tell her stories, rock her and play her music through headphones. I talked to her and told her how much I loved her. I did everything I could to make her feel loved and cherished.

July 29 2002 - I was 38 1/2 weeks pregnant. Abigail gave a hard time with the NST (non-stress test). Her heartbeat was off and on. The Dr. didn’t want to take any chances and put in an order for me to be induced. I was to return at 6pm that night and by the next morning - our little angel would be born. I spent the few hours that I had before I returned to the hospital anxiously getting ready. Packing, cleaning up and making sure the dogs were taken care of.  I checked into Labor and Delivery at 6pm sharp. After all the paperwork was done I hopped in the bed and waited anxiously for my contractions to come. It was 3:30 am when my water broke. At 10:03 AM, I gave birth to Abigail Marie.  She weighed 4lbs & 14 ounces and was measured at 18 inches long. I only got a quick glimpse of her before the doctors swept her away and brought her down to the NICU (neonatal intensive care unit). She was so beautiful. She had black hair, the cutest little button nose and a strong set lungs. I knew from that point on that she was going to be ok.

I was in recovery for about an hour before I was taken down to NICU. I couldn't wait any longer to see Abigail. I knew that I had to rest and take care of myself but I wanted to be by her side - I wanted to know that she was safe and healthy. I wanted her to feel my presence and know that her mommy  loved her so much.  Abigail was placed in a heated crib and had wires attached to her chest, hands and feet.  The neonatologist explained everything that was hooked up to her (heart monitor , IV, BP etc... ) and gave the results of the tests he ran on her.  Besides her obvious positioning of her hands and feet - there was no signs of a growth on her neck, the echocardiogram showed no signs of any defects and she was breathing on her own. Abigail beat the odds. I couldn't be any happier.

While Abigail was in ICU -she fed every 3 hours.  She had to do a 24 hour feeding with no problems before she would be discharged.  I tried to breastfeed her but my milk flow was low and she had trouble latching on. :) It was decided to put her on formula so she could come home.

The Clinical Genetist formally diagnosed her condition on August 1st, 2002.  Abigail has Amyoplasia, a form of Arthrogryposis Multiplex Congenita.  This is typically a sporadically occurring condition (one in 3000 births) in which children have decreased muscle mass and positional deformities of extremities due to decreased intrauterine movement. Basically, Abigail hands (internally rotated) and feet (clubbed bilaterally) are turned inward. She also has a hemangioma (strawberry nose) present on her nasal tip. Abigail will be seen in a few months for a genetics follow-up and will be seen by the Shriners Hospital for Children for the next 18 years. She will wear splints to try and correct the positioning of her hands and feet and receive occupational and physical therapy at home to prepare her for surgery next year.

It has been an extremely long and hard year.  But by God's grace I have my beautiful baby in my presence.  I have no regrets regarding any decisions made for Abigail, nor at any point consider her life a choice. My experience with Abigail has inspired me to rethink my priorities and reflect on what is truly important in life. I have learned to be a strong person and to be strong for Abigail. God creates obstacles that we must all overcome.

I would like to thank my family and friends for their support and prayers during our time of need.  You all mean the world to us and appreciate all that you have done. I hope that the years ahead will be a lot easier and pray for Abigail's quick recovery.

Abigail truly is my miracle.

Written September 2002



 

Arthrogryposis Multiplex Congenita is a rare muscle condition that occurs in approximately 1 in 3000 births.  The most common form of AMC is Amyoplasia (40% of AMC cases).  Causes are varied including lack of intrauterine movement - which is suspected in our case.  Multiple joint contracture can occur in all limbs but some may be more affected in the upper or lower extremities. Some cases are more severe than others including those that involve the internal organs.  Treatment usually occurs soon after birth through splinting, casting, therapy and in some cases surgery. Intellectually, AMC children develop normally and in Abby's case she is a few months behind  in her gross and fine motor skills and has a 4-6 month delay in speech.  


Photo by Rick Guidotti

Frequently Asked Questions about Arthrogyrposis Multiplex Congenita

Abby's Doctor

Dr. Harold van Bosse - Shriner's Hospital for Children (Philly)  ~ Dr. Van Bosse is an orthopedic surgeon with a special interest in AMC. He runs an Arthrogryposis Clinic @ the Shriners Hospital for Children in Philadelphia, PA.   He is truly an amazing doctor who really cares about his patients and their families.  I highly recommend that you make your appointment with his clinic today! 


Dr. Harold van Bosse (Orthopedic Surgeon specializing in Arthrogryposis)
Our Hero, Friend and Board Member for AMCSI!!!!!

 


Abby & Dr. Harold van Bosse
His tender loving hands on my baby's feet that he's going to fix!!
Everyone of his patients are HIS kids.  He just loves them all so dearly!

 

Recommended AMC Doctors/Hospitals

Shriners Hospital for Children
Alfred I Dupont Hospital for Children
University of Washington Medical Center
Texas Scottish Rite Hospital for Children
NYU Hospital for Joint Diseases



Photo by Rick Guidotti
Abby poses for Rick Guidotti, award winning photographer & director of
Positive Exposure - Celebrating the Spirit of Difference.

Photographing for the likes of Yves Saint Laurent, Elle, Harpers Bazaar, Revlon, L’Oreal and Life Magazine was not enough for Rick Guidotti. In 1998, Rick founded Positive Exposure, a nonprofit organization - photographing individuals with various genetic disorders redefining beauty and CELEBRATING the SPIRIT OF DIFFERENCE. Rick's beautiful photography can be seen in galleries and exhibits around the world. Rick is based out of New York City.  Thank you Rick for your beautiful photographs of our amazing AMCer's!!! 

How it affects Abby

Abby has the following characteristics:

Born at 38 1/2 weeks at 4lbs 14 oz
Strawberry Hemangioma on nasal tip
Herniated Umbilical Cord
Internally rotated shoulders, arms, and hands
Extended Elbows
Thumb-in Palm or Adducted Thumbs
Bilateral Clubbed feet

Click on links above to see picture


Photo by Rick Guidotti

Genetic Report  - read the details of the doctor's findings regarding Abigail's condition. Pre-natally-3mons old


Her Growth 

At Birth Abby weighed 4lbs 14oz & was 18" in L
At 29 months Abby stands at 28" and only weighs 17 pounds.
At 3 years 9 months Abby stands 35" and weighs 23lbs  
At 4.5 years Abby stands 36" and weighs 26lbs
At 4 years 10 months Abby stands 37" and weighs 27lbs
At 5 years 3 months Abby stands 39" and weighs 30lbs  (with her AFO's & shoes on)
At 6 years 4 months Abby stands 41" and weighs 35lbs
At 7 years 2 months Abby stands 44" and weighs 37lbs


Just The Three of Us

Abby's Hemangioma

Abby was born with a facial mark that doctors call a Hemangioma - but mommy's call them stork bites or angel kisses.  It's a strong red mark that can be found throughout the facial area - predominantly the forehead, nose and upper lip area.  This has also be noted to be a classic sign of Arthrogryposis.  Many children with AMC have this *kiss* on their face.  Some are more prominent then others.  Abby's is mainly on her nose.  The redness has faded over the years but if she gets mad, sick, or crys this area flares up bright red.  Allot of mom's have asked about this strange marking and when it will fade.  I hope this will ease some of your worries.  I believe this marking is just a pure reminder from God about how special and unique our children with Arthrogryposis are. 


How she eats

Abby was a formula fed baby - mostly because it was the only way to get her out of the NICU.  She never really had trouble holding onto a bottle - she found her own ways to prop it up.  I found this amazing bottle at Toys R Us.  It's called the Podee and it's a hands free system.  The nipples, straws, and tubing system are all disposable. 


Podee - Hands Free Baby Bottle

When Abby started eating finger foods on her own (ie, goldfish, gerber puffs), she had a unique way of getting the food to her mouth.  Instead of picking up the *puff* from the table and bringing it straight to her mouth - she would pick up the puff, raise it straight up in the air and let her arm fall to her mouth.  A few months of OT helped with this motion (to eliminate the food to the sky step) but it was sweet to see how she invented ways to eat.  Abby always preferred to use her fingers to eat her solid food.  She is almost 6 and would rather eat with her hands.  I don't force her to use her utensils only because she eats a whole lot more this way.  She can get frustrated if she cannot get the food item on her spoon or fork.  And Yes! I still cut my babies food up in bits and pieces.  Abby can carry her lunch tray at school from the food area to the seating area only needing assistance to lift the tray onto the table and to open her milk carton.
 


Ani & Jennifer (Jen is an Adult with Arthrogryposis & My BESTest Friend!)
Photo by Rick Guidotti

 

Abby's procedures
Heal Cord Release
Talectomy (removal of the Talus Bone)


At 11 months old, Abby had two procedures done to correct her severely clubbed feet at the Shriners Hopsital in Greenville, SC. 

At 7 years old,  Abby agreed to start serial casting (Ponseti Method) to correct her bilateral clubbed foot recurrence. 

Posterior Tibialis Tendon Transfer Surgery (Date To Be Determined)

 


She was casted for 14 weeks.  6 weeks in long leg casts with bar.  6 weeks in long leg casts without bar.  2 weeks in short casts below knee. 



Abby was sent home wearing pretty purple Ankle Foot Orthotics or (AFO's).   

 


 

Walking

Abby probably heard the doctors talking about her never being able to walk in my womb - because this was one DETERMINED little girl to prove EVERYONE wrong. 
Abby started walking at 22 months.  A little wobbly and lots of falls but she did it. 

Abby's Therapies & Extra Curricular Activities

Physical Therapy
Kineseio Taping  
Occupational Therapy
Speech Therapy
Hippotherapy
Aqua Therapy
Early Intervention ( Family Training)
Massage Therapy
Painting - Abby likes to paint like (Reesa) Theresa - an adult AMCer who paints beautiful watercolor paintings with her mouth.
Special Needs Karate - Abby is a Yellow Belt for the Gifted Warriors - She also performs with their Demo Team.
Miracle League - Abby participates with the Carolina Miracle League at Miracle Park. 

Abby's Daily Exercises

Range of Motion 


Photo by Rick Guidotti



Hands

Stretching - holding each stretch for one minute 4-6 times a day supporting joint, stretching wrist up and thumb up and out.

Hand Exercises with Theraputty.

Wears hand splints 3-4 hours a day.  They have also increased the time she wears her Hand Splints at school.  Her therapist noticed her hands turned toward her little finger.  So we are giving extra support to keep her hands in a neutral position.  We also use Kinesio Taping on top of her wrists and thumb joints. 

Abby uses spring action adaptive scissors at school to help her cut with ease. 

Abby wears Benik hand splints on her hands and AFO's or Ankle Foot Orthotics on her feet.


Photo by Rick Guidotti

Feet
Stretching & Kinesio Taping 
Abby's PT Session - see how her PT does her stretching exercises


Abby, Aiden & "Grandma Mary" 


Other Related Problems 

Upper Respiratory Infections
Allergies
Asthma 
Pain

I was given a prenatal diagnosis of Amyoplasia at 21 1/2 weeks.  Abby's clubbed feet and "police man tip" hands were identified in the ultrasounds. My only complaint during this pregnancy was the constant nausea ( 5 1/2 months of vomiting).  I lost 40lbs instead of gaining!  My pregnancy was considered high risk and was given weekly NST (non-stress test) and Bio-Physical Profiles ( BPP).  (Read complete story above for more details)



Abby's Team

Shoes for AFO's
Answer 2 -  Purchase your Answer 2 shoes today @ thewideshoes.com 
Markell
Keeping Pace

Hatchback Elites

How it affects siblings

I was assured early on that the chances of AMC affecting another one of my kids was very low.  
Abby's younger brother and sister are unaffected.   There are over 150 types of Arthrogryposis Multiplex Congenita.   Abby has the most common form, Amyoplasia which has a 0% recurrence rate in future children. 


Abby & Aiden

 

 

Video Vault
 
Abby figures out how to sit up by herself (11 months)
Abby walking  (22 months)
Abby walking II (22 months)
Abby dancing
Abby rocking Aiden
Abby walking down stairs w/ no assistance (38 months) 
Abby walking up stairs w/ no assistance (38 months) 
Abby walks down the aisle!
Green Light Batter (5 years)
Abby's 1st game with the Carolina Miracle League Fall Season
She be jammin
(5 years) Abby & Aiden's new hobby - Bangin' until we give mommy the Biggest headache EVER!!!  They love it and mommy loves it too! LOL :) 
Aiden showing off his skills
That Abby 
Abby & Aiden -  Love You, Hasta! 

 

 


Abby bears weight on her feet

Someday I'll jump through puddles,
Take a stroll or run a race
Someday I'll walk across the street
or maybe walk in space.
Someday I'll scale a mountain
or I'll join a ballet corps.
Someday I'll walk a tightrope
or explore the ocean floor.
Someday these feet will do something
that only heaven knows,
but for today they're happy,
just to wiggle all their toes!!!


On her feet at therapy

HALTER ~ Handicapped Athletes Learning To Enjoy Riding


Abby rides Shadow @ HALTER  - (Click picture to watch video of Abby riding Shadow)

Abby has been riding with HALTER since she was 18months old.  6 years later - She is able to ride her horse unassisted.  She amazes me everyday.

 

 

ARTHROGRYPOSIS - Online Support Group

AMCSUPPORT.ORG -  Your one stop website to get all the latest information on AMC.  Join hundreds of families for support, friendship and fun.
I created this online support group in 2005 when my email box became overwhelmed with questions from new and expectant parents of children with Arthrogryposis.  Some of the questions the families had I could answer - some I could not.  So I proceeded to connect families via email who had similar stories.  Soon after I created a website (amcsupport) with a user friendly message board and invited all the families who sent me questions over the years.  It took off from there!  Our dedicated members have made this online support community a real family.  We currently have 800 members from all around the world.  We have held 4 AMC conventions (Chicago, Texas & Ohio, Philadelphia).  The group has obtained their incorporation status in 2006 and has received their 501c(3) status in September 2007.  Arthrogryposis Multiplex Congenita Support Inc. consists of 9 dedicated board members who have AMC very close to their hearts.   We are dedicated to serving our families with advice, support, and comfort.


Theresa & Abby

AMCSI will be celebrating our 5th Anniversary in Orlando, Florida.  The dates for the 5th Annual Arthrogryposis Convention will be announced soon.   Please contact our convention chairs (Marybeth, Maureen & Savanna) at florida@amcsupport.org or visit http://www.amcsupport.org for more information.  


Theresa, Luca Lazy Legz Patuelli, & I
The world famous breaking dancing AMCer
He was on a "little show called America's Got Talent"
Such an honor to meet him!!!

AMC Documentary ~ The Sweetest Gift:  Living with Arthrogryposis.
A documentary produced by Margaret Chaidez (Owen's Mom) focusing on those living with Arthrogryposis Multiplex Congenita & their families. 
In production.  Release date set for late 2009. 
http://www.amcdocumentary.org



We had the privilege of welcoming Peg into our home to film our family for this wonderful project.  I am so honored to be a part of Peg's dream and extremely thankful for all she has done for our families and AMCSI.   What an amazing experience! 


Peg & Abby
Touching So Many Lives

Marriage and a Special-Needs Child

85% of marriages involving a child with special healthcare needs fail. 

The challenges of raising a special-needs child can become a blessing.  Follow the link below for

Tips for Meeting the Challenge
 


My AMC Family
Just a small part of my ever growing family.  We started with a mere 100 attendees and have grown to well over 500 in 4 years! 


 

University's/Schools that have featured Abby's Story & Pictures in Presentations & Reports
I know a lot of visitors come here to research AMC...so I will try and provide as much information as possible.  If you use any of this for a research project or presentations please give credit where credit is due.  Also if you are using specifics about my daughter please ask before using her info or pictures in your reports or presentations.


Rockhurst University- Kansas City, MO - Student
Johns Hopkins University - Baltimore, MD - Student
Northern Arizona University - Flagstaff, AZ - Doctor of Physical Therapy
Worcester State College - Worcester, MA - OT student
Salem State College - Salem, MA - Professor teaching a class
University of Connecticut School of Social Work - West Hartford, CT - Student
University of South Dakota - Vermillion, SD - Physical Therapy Assistant Students
Tidewater Community College - Virginia Beach, VA - Physical Therapist Assistant Students
Oakbrook Prepatory - Spartanburg, SC - Student
Midwestern University -Glendale, AZ - Occupational Therapy Student
University of North Carolina - School of Medicine - 3rd year Medical Student

Florida Community College - Jacksonville, FL - Physical Therapy Assistant - Student
Columbia University -  New York - Physical Therapy Student

PT in UK did a presentation for colleagues using Abby's pictures

Special thank you to the students and professors who do ask for my permission (fill out form below) and giving credit to Abby's site!


Abby paints a horse with her mouth


Abby & Friends on the Beacon Drive-In Billboard!  Call-IT!!! 
 

ABBY'S PUBLISHED!!

Abby's picture is in the Second Edition of the academic textbook - Anesthesia for Genetic, Metabolic and Dysmorphic Syndromes of Childhood written by Dr. Baum and Dr. O'Flaherty published by Lippincott, Williams & Wilkins - Available for purchase NOW at amazon.com.  Book list price $150. 


Spartanburg Herald Journal

Abby & Theresa - Front page of Sunday's Spartanburg Herald Journal
Story by Lee Gray Photos by Mike Bonner

A Little Less Talk


Abby floating down the Lazy River @ Shipwreck Cove 
 


Photo by Rick Guidotti


Make a Donation

Make a Donation to the Special Needs Trust Fund of Abigail Marie.  Donations will be used for travel & other medical expenses incurred while Abby receives treatment in Philadelphia, PA.  Any donation is greatly appreciated.  Thank you all for continued love, support and prayers for my beautiful, courageous daughter, Abby!  

Meet Abby's Mom

One mom. One Dream. And A Little Girl With Arthrogryposis.

Ani created AMCsupport.org, an online Arthrogryposis Multiplex Congenita (AMC) support group in July of 2005. Ani, the mother of Abigail Marie, a child born with Amyoplasia, a form of Arthrogryposis, created the group because at the time, there was very little information available to families due to the rare occurrence of AMC. The online group was a direct result of the high volume of emails she received from families regarding a website she had created to document her daughter’s progress. During the ensuing years, the interest and activity of the online support group grew and blossomed. From the original 30 members, membership has grown to over 500 families. Once a strictly online community, AMC support brought families together for The First Annual AMC Convention, a real world gathering, in Chicago, Illinois, during the summer of 2006. A second convention held in Arlington Texas, July 2007 brought even more families together. The largest portion of Ani’s dream was to form an IRS recognized 501(C)(3) corporation that would continue her support of families and medical professionals well into the future. With the help of an army of volunteers, and the generous contributions of Roland Pieper, an attorney whose granddaughter has Arthrogryposis, a Board of Directors was created, and work began on the daunting process of becoming a non-profit corporation. Submission of the application for the approval of the IRS occurred on October 6, 2006. On September 7, 2007, Arthrogryposis Multiplex Congenita Support, Inc. was granted Non-profit status as a 501(C)(3)corporation, and that dream became a reality.  (ms)
 


Dr. Judith Hall (clinical geneticist) & I

We had the great pleasure of having Dr. Judith Hall present @ our 4th Annual Arthrogryposis Convention.  She was truly a god send to all of our attendees.  She has been researching AMC for 30+ years!  What a dream come true to meet her!!! 

If you are pregnant, and Arthrogryposis is diagnosed through ultrasound findings,  Dr. Hall recommends the following to help the baby move (in-utero therapy):

  • Drink Coffee or Tea 3x a day. 

  • Take 10 deep breaths 3x a day.

  • Keep Moving.  Exercise.

  • 10 minute fast walks
     

It is also recommend, if the baby is healthy enough, to deliver early (2-3 weeks) so that the contractures will not be as severe. 


Mommy & Beautiful Isabella Rose

 


  


AMCSI Girlz - Ani (founder), Theresa Lucas (President),  Jennifer Keeton (Our 'Tresure'r) Photo by "Crazy Rick" Guidotti 

“What time I am afraid, I will trust in thee. In God I will praise his word, in God I have put my trust;
I will not fear what flesh can do unto me.”
 
Ps. 56:3,4

 


Proud Parents Ani & Darrell
Big Sister Abby & Big Brother Aiden


My Handsome Hubby & Our Beautiful Daughter Bella Boo 


My three loves! Aiden, Isabella, & Abby  Aren't they beautiful!!!!
Thank You for your continuous support, love and prayers.  Love You All.
Family is formed in the

  Thank you for being there.  We love each and every one of you who have supported us throughout our difficult times.  You know who you are and we are FOREVER indebted to you.  A special thank you to our extended family members, Mahan & Porter family...for being the best grandparents EVER! to our children.  To my best best friends Heather, Jess, Steph - for all you do for me everyday, anyday, anyhour!  My Tri-BFF's - I love you so dearly - My family @ AMCSI - for being my rock and keeping my dreams going! My Mommy & the rest of my family @ home....I could never do this without you. AND last but not least to my wonderful husband & father to my babies....you are the glue that has mended our hearts and carries our amazing bonded family through thick and thin. Thank you for all you do for us, for loving us, for supporting us. For the good night hugs and kisses and bedtime stories & movie nights. For planting the beautiful flowers for me! For building silly birdhouses for the kids!  I cannot imagine my life without you and thank GOD everyday for blessing that broken road..! 

WE WOULD LOVE TO HEAR FROM YOU. SEND US YOUR GREETINGS,
PRAYERS, QUESTIONS &/or COMMENTS BY emailing Ani at forabby dot com

©2002-2009 ForAbby.Com Copyright Notice. All photographs are the exclusive property of forabby.com (except where stated otherwise) and are protected under international copyright laws. They are made available for your personal viewing and educational purposes only. The photographs may not be copied, reproduced, redistributed, manipulated, projected, used or altered in any way without the prior express written permission of forabby.com. Images may be used for non-profit education school or research projects by requesting via email (use email form above) and including a description of the use of requested image.  Permission will be granted in these situations for images that will be used in good taste and if proper reference is given. Photo's taken by Rick Guidotti are exclusive property of Rick Guidotti & Positive Exposure and is used with his permission. 

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